Thursday, January 29, 2015

One Great Big Post

It has been a very busy, last few months.
More than that, it has been a hard few months. I guess it's that season for us. I just try to remember to take deep breaths, and remember that we are not walking this journey alone. I find myself in places I never thought I would find myself, and honestly, I feel so alone. Sure, I share with John, family, and close friends, but some things I just can't put to words. I find myself speaking to God with the simplest of prayers:

Remind me to breathe.

Without love I have nothing.

Remind me.

Please let it be okay.

Please let this season pass quickly.

What are you trying to teach me, Lord?

One step at a time.

Help me to trust.

Give me patience.

Don't let them get sick again.

Why Lord? Why?

God is gracious, and in the midst of these last few months, we have had some good times too. Many good times in fact. And so I am giving a little update....

My Mom continues to come to visit for weeks at a time. Of course she bakes. Up a storm.

She tried homemade pop tarts. They were a success.

The home schoolers continue to impress me with their drawing skills.

Anastasia

Andrew

Sveta

Paul

Did I mention that we adopted again? Meet Ginger. We got her from the local (kill) shelter. Though it is obvious that she was abused and neglected, she is the gentlest, sweetest dog ever!

This was the first day we got her. You could see her ribs.

Back to more drawings.

Sveta

Anastasia

William (Yes, William is back to homeschool)

Andrew

Paul

The other night, Caleb met Rainn Wilson at his college. Did you know he is the founder of Soul Pancake?

Natalie is doing well in so many ways, but it appears that she has aerophagia. Basically, she swallows air. All. the. time. The act of swallowing air, snorting, huffing and puffing, and making constant noises with her mouth pretty much consumes her thoughts. And she bloats up to epic proportions. Then she passes gas and burps... if we are lucky. Otherwise she has trapped gas, and often times constipation. I am 1000% certain this is what she has. Our pediatrician seems to agree and has put in referrals to see a GI specialist. Not sure what they can do based on the research I have done since this seems to be anxiety/stimulation driven, but we'll see.

Natalie had her echo last week which showed some residual VSD so we have been referred to the cardiologist. We need this clearance so she can have tubes put in her ears and an ABR sedated hearing test. Hopefully we can get a better picture of how well she can hear since she failed her hearing test a few days ago.

Other than the medical stuff going on, Natalie is thriving. She now loves her baths. She will crawl down the hall when she sees it is bath time. She no longer cries when she wakes up after her nap. She will touch her bottle with our coaxing instead of pulling her hand away and screaming when we give it to her. She will tolerate textured foods. She smiles and laughs all the time. She loves music. She can stand for five minutes. She can make herself swing back and forth in the baby swing.

I need to remind myself of all the progress she has made these past two months. I guess it is all how I look at it. I am with her everyday, all the time, and so I see only the tiniest of changes... a little each day. I'm embarrassed to say, but it is hard for me to see sometimes.

Our pediatrician on the other hand, has only seen her twice. Once, when she first came home and a second time just a few days ago. She said that Natalie looks so different